Our precious Keyan

For the most part, most of you know that I do not use this blog to keep everyone updated on Keyan's health issues. I mostly use the blog for the "what is going on in the Hogan household" type of stuff. There have been a few occasions in the past where I have posted about Keyan in order to spread our story to as many people as we can...today is one of those days. This post is not for the weak of heart, nor is it one that I really want to write but we need prayers, and lots of them and this is the best way for me to circulate that need. Here is a brief synopsis of what has been going on.

For the past few weeks, we have noticed Keyan having some disturbing neurological behavior. She has been less focused, gotten lost inside our house, been much more tired at school, and her "staring spells" have been increased. Last Friday, we had an appointment with the pediatric neurodevelopmental pediatrician and we all agreed that something was going on and they were going to schedule an EEG of her brain. Things changed when Wednesday morning of this week, at 3am, Keyan spiked a fever of over 103 degrees. Our nurse treated with meds and the fever seemed to go down appropriately. At quarter to seven that same morning, Paul woke me up because Keyan was lying in bed "shivering" and making constant whimpering sounds, nothing like we have ever seen her do before. I went and checked on her and thought she may be at the start of a seizure, however, she was able to maintain eye contact with me so I was somewhat relieved. After about 15-20 minutes of "shivering", it suddenly went away and she went back to sleep. Throughout the day her temperature ranged between normal and 105 degrees, at which point I called our GI doctor let them know that I was on my way. They decided that it was probably best to admit her directly to the peds floor. Keyan has a broviac central line that delivers her nutrition directly into her bloodstream. While we are thankful that the technology exists to do that, one of the down sides to having a central line is that whenever you have a high temperature, you need to have blood cultures drawn and that is done at the hospital.

After arriving at the children's hospital we got settled into our room and waited to get things rolling. We got the blood cultures collected, had a chest x-ray, and for the first time in Keyans life, I was praying this was a pneumonia. Usually, I have a pretty good idea what is making her sick and I just could not place my finger on it. Needless to say, I was pretty worried.

Around ten o'clock she was just finishing up her breathing treatments and was getting her therapy vest. She was very fussy during the vest and we actually had to end it sooner than normal. I was holding her at the time and when we finished, she was still shaking. She had started to do that shivering thing she was doing that morning. The nurse was giving some meds and we were chatting while I tried to get Keyan to calm down. All of a sudden, Keyan eyes sort of glassed over and shifted to the right. I tried to get her to look at me and the longer she didn't the more my fears crept in. All of a sudden, she was blue and not responsive...she started to have a very severe seizure. The nurse pulled the code cord and we both started yelling for help. Within seconds, a doctor was in the room, they had the crash cart, and they had oxygen to her trach. As the room filled with people my brain rapidly tried to take in everything that was happening. A supervising nurse came to my side and talked to me about everything that the team was doing. As the doctor kept yelling for more and more Ativan, all I could think was that this was the time were Keyan's little body would not fight thru the torture it was inflicting on itself. I fell onto the bed sobbing but quickly had the where-with-all to pull myself together so that I could be part of the team helping her. I immediately called Paul and told him to come, and watched and waited for the seizure to give up its hold on my baby. As the medicine finally began to ease up the seizure, my body started shaking and would not stop. She was transfered into the ICU and from there the doctors did a spinal tap, collected all the other cultures and we waited. No sleep was to be had by me, but they kept her sedated to give her brain a rest. Paul arrived and as I filled him in we cried together, held each other, and left our deepest fears unsaid.

As the night passed, I sat vigil by her bed and tried to figure out where Keyan was going to take us this time. This morning brought several doctors, more tests, and finally this afternoon, some answers. Her central line is growing bacteria as well as her blood, which means she is septic. They have changed what antibiotics she is on and we will know what specific bug is attacking her some time tomorrow. For now, the plan will be to take her to the OR tomorrow and take the broviac out. It has to remain out until the infection is clear which causes more problems for Keyan than I have space to type. We are in a situation that we had hoped to avoid. As I type, she is finally opeing her eyes a little bit and making eye contact with me. I have never been more happy to have her gaze meet mine! I really can't wait to have her get up and walk, but I know that I will have to be patient for that. Once again, we find our family separated for an extended length of time, and we are forced to make very hard decisions. We are left wondering what the future holds and are hoping we are strong enough to persevere. We are so thankful she is a fighter, but we sure wish she didn't have to fight so hard!